Data Collection and Privacy: Tools and Resources for LGBTQIA+ Inclusion by Design

Webinar

Presented on: June 11, 2024

The MRCT Center added two new tools to the LGBTQIA+ Inclusion by Design in Clinical Research Toolkit: the SOGI Data Collection Checklist and the SOGI Data Privacy Checklist.

During this webinar we discussed:

  • The critical role of representation in clinical research, particularly for LGBTQIA+ communities, and an overview of the foundations supporting the LGBTQIA+ Inclusion by Design in Clinical Research Toolkit.
  • Essential considerations for collecting SOGI data, covering survey and form design, appropriate language in study materials, and the protocols for collecting, storing, and sharing SOGI data.
  • Practical implementation examples and areas that require further research and guidance.

Related Resources

MRCT Center Resources

Other Resources – by slide:

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Action and Influence: Implementing the Clinical Research Glossary and Your Critical Role in Public Review

Webinar

Presented on: June 4, 2024

Learn how four organizations, Mass General Brigham (MGB) Rally, HonorHealth, the Society for Clinical Data Management (SCDM), and the CureMito Foundation, are implementing the MRCT Center’s Clinical Research Glossary and how you can participate in Public Review, a vital process to ensure the glossary is a CDISC global standard.

Related Resources

Webinar Biobook
The Clinical Research Glossary: Learn More
The Clinical Research Glossary: Working Group
Implementing the Clinical Research Glossary: How to Attribute the MRCT Center
On-Demand Webinar: The Clinical Research Glossary: New Words, New Opportunities
On-Demand Webinar: A Global Standard for Plain Language in Clinical Research: an MRCT Center and CDISC Collaboration

The Clinical Research Glossary: New Words, New Opportunities

Webinar

Presented on: April 2, 2024

With over 160 definitions, including images and supportive information, the Clinical Research Glossary has been designed to support the communication of clear research information, along with tailored, shareable images to foster engagement and understanding.

Learn more about:

  • Building trust and transparency with participants through plain language information sharing.
  • The dedicated team members, and robust process that is followed, to create this global standard.
  • Strategies and approaches to implement the Clinical Research Glossary content into patient-facing materials. 

Related Resources


REACH: Advancing DEI in Human Participant Research

Webinar

Presented on: March 7, 2024

Introducing Research Ethics Action Collaborative for HRPPs (REACH), an initiative spearheaded by the MRCT Center, AAHRPP, PRIM&R, and Mass General Brigham to curate, align, and disseminate tools to advance access to and inclusion in research—for all potential participants–tailored for Institutional Review Boards (IRBs), Human Research Protection Programs (HRPPs), and the broader community. 

We Need Your Voice:
Your perspective is invaluable to us. Help guide our efforts to improve research access and inclusion by sharing your thoughts via our brief survey. Your feedback is critical in shaping the tools and resources we develop and disseminate.

Related Resources

Panelist Biographies
List of resources shared during the webinar
Questions & Answers
Survey

Amplifying Participant Voices: Crafting Respectful, Inclusive, and Understandable Patient Materials

Webinar

Presented on: October 23, 2023

Learn how these panelists incorporate participant perspectives to craft patient-facing materials that are accessible, culturally competent, and easy to understand. Collecting feedback enhances engagement, empowers patients, improves communication, and addresses information gaps, paving the way for enriched participant experiences and improved health outcomes.

Additional Resources

MRCT Center Health Literacy Website
Health Literacy Resources for IRBs
Health Literacy Best Practices
Accessibility by Design Toolkit
MRCT Plain-Language Clinical Research Glossary
Including Young People in Clinical Research Toolkit
Webinar Panelist Bio Book

Returning Individual Research Results and Data: Digging Deeper into Genetic Results and Secondary Findings

Webinar

Presented on: September 21, 2023

Presented at: Virtual

The MRCT Center released a series of case studies describing research stakeholder experiences of returning individual results to participants at a recent webinar in May.  Given the interest and number of questions we received, we offered three virtual “Digging Deeper” sessions to foster additional discussion and learning about topics that can be challenging to navigate. 

This webinar was the third of the three webinars in the Digging Deeper series. Megan Frone of the National Cancer Institute discussed a case about returning genetic/genomic results and secondary findings.

Returning Individual Research Results & Data: Digging Deeper into Genetic Testing Secondary Findings webinar recording

Related Resources

ACMG/AMP Recommendations for Return of Secondary Findings
NASEM Returning Individual Research Results to Participants

Case Study: Responsibly Returning Secondary Findings
May 2, 2023 webinar: Returning Individual Research Results and Data to Participants
July 27, 2023 webinar: Digging Deeper into Pfizer’s Patient Data Return Solution
August 17, 2023: Digging Deeper into IRB/HRPP Responsibilities
Return of Individual Results website

Returning Individual Research Results and Data: Digging Deeper Webinar Series

Webinar Series

Presented on: July 27, August 17 and September 21, 2023

The MRCT Center released a series of case studies describing research stakeholder experiences of returning individual results to participants at a recent webinar.  Given the interest and number of questions we received, we offered three virtual “Digging Deeper” sessions to foster additional discussion and learning about topics that can be challenging to navigate.  

Returning of Individual Research Results and Data: Digging Deeper into IRB/HRPP Responsibilities

Webinar

Presented on: August 17, 2023

Presented at: Virtual

Related Resources

Case Study: IRB/HRPP Responsibilities
May 2, 2023 webinar: Returning Individual Research Results and Data to Participants
July 27, 2023 webinar: Digging Deeper into Pfizer’s Patient Data Return Solution
Return of Individual Results website

Ethical Considerations for Decentralized Clinical Trials: Tools, Resources and Best Practices

Webinar

Presented on: June 20, 2023

Presented at: Virtual

Description: The MRCT Center and Medable convened a multi-stakeholder group to address ethical and regulatory opportunities and challenges related to Decentralized Clinical Trials (DCTs) and presented a joint webinar titled “Ethical Review of Decentralized Clinical Trials (DCTs): Tools, Resources & Best Practices” on June 20, 2023.

During the webinar, Dr. Barbara Bierer (MRCT Center) and Dr. Pam Tenaerts and Leanne Madre (Medable) presented guidance and tools organized around 12 key elements. These elements are grouped into three domains: People, Remote Data Collection, and Data Oversight. The aim is to provide IRBs, ethics committees (ECs), and sponsors with the necessary framework, tools, and recommendations for conducting ethical reviews. Robert Ramanchuk provided insights into the real-world, practical implications of the recommendations.

Program Slides